Niki’s Cycling Video Diaries

31/12/2022
NEW VIDEOS!

 

Hi Everyone, my name is Niki, I’m now 52 and these are my video diaries documenting what recovery from many years of chronic pain looks like for me. They were made in 2020 onwards.

Recovery looks different for everyone and is often very different to what you expect. It doesn’t mean freedom from all pain, but it does mean a freer and more fulfilling life.

It means learning to empower yourself and not expect a cure but that there are many and myriad ways of helping yourself, but there is also a lot of support out there, although for me it wasn’t within the medical system or by searching for a cure. Ironically when I let go of the hope that medicine would cure me, I found the treatment within myself, along with the Curable app.

I have Trigeminal Neuralgia for 21 years, a severe nerve pain condition of the face, however in the last five years I have been doing brilliantly with science based Self-Management techniques to control and reduce the pain and I’ve made a recovery into a more active and engaged life.

Recovery looks different for everyone but I wish to show that recovery and living a good life and being active and happy is very much a possibility for those with chronic pain and fatigue. I had also has been struggling with the effects of physiological dependence on prescription drugs, the results of which have been incredibly challenging, but these diaries document my progress with tapering off these as well… all with minimal medical assistance.

In the introduction video I introduce myself – I had already been getting a lot more physically fit with walking but I started a pilot study on an awesome outdoor rehabilitation course called Muddy Care (you may have seen some of these videos on their YouTube channel). After trying cycling in the Muddy Care Pilot study I found I really enjoyed it. So when COVID 19 hit and the cycling days were stopped, I dug out my sister’s old mountain bike and got out cycling, regardless of the lack of gears, brakes or a clue!

These diaries show the progression from small beginnings, getting fitter, how I manage and what I have learned. The videos show the ups and downs of this progress… it’s not all fun and games, I don’t always get it right, I can talk rubbish and I sniff WAY too much… but I try to be authentic to myself and my values and show these videos it in their raw, unedited and vulnerable glory. These were made in 2020 and I’m slowly uploading new videos (even now in 2023 I have more that could go on!!)

I start these videos cycling 7 km and being very proud of that. Then in September 2021 I joined the Flippin Pain Outreach Tour and ended up cycling 170 MILES in 4.5 days. I’d never have believed that was possible but it was. In Spring 2022 I had urgent gallbladder surgery and it took a while to get back on my bike and back to that happy place. I have learned that if I go backwards fitness wise, living with chronic pain teaches you how to cope with set backs and how to get back up that ladder after a slide down a snake faster and better than ever! I joined the Flippin Pain Peloton in May 2023 again and later cycled the English Coast to Coast in September. Life is not always these highlights, but that’s ok!

See below for more updates and further milage in 2023!

Chapter One Introduction.

Chapter Two

Chapter Three

Chapter Four – musing on the mind-body connnection

Chapter Five – taking time to listen to the birds

Chapter Six – searching for old haunts

Chapter Seven – exploration

Chapter Eight – Trigeminal Neuralgia triggers beaten!

Chapter Nine – exploring is fun!

Chapter Ten – musing in the heat!

 

Further videos on the playlist below and added regularly….

 

Flipping Pain Outreach Tour – 170 miles!!

In September 2022 I was proud to join the Flippin Pain Outreach Tour – cycling 170 miles in 4.5 days – and aiming to “flip” the publics understanding of pain at the same time! Here is a compilation video of my time on the Tour.

 

 

Full Playlist of Niki’s Cycling Video Diaries

Peddling for Pain in 2023

2023 has been another year with cycling at the forefront! I joined the Flippin Pain Outreach Tour again, around Teesside this time – I didn’t make all of it sadly, but very much enjoyed what I did do despite not being that fit. The Tour itself was wonderful.

In September 2023 I joined some of the other lived experience friends from the Outreach Tour to ride the English Coast to Coast. We raised £2,000 for Pain Concern and were supported by Footsteps Festival, Live Well With Pain and Flippin Pain and many other wonderful friends and supporters. It was a huge achievement especially as we were unsupported by any infrastructure other than having our baggage moved for us! Real self management! Again, showing how vital peer support is.

Check out a blog we wrote about it on Live Well With Pain here.

Below is my complete video chronicling the three days.

Here is the film I made for Pain Concern with both mine and Lee Vaughan’s experiences.

 

Here is a link to the playlist of both mine and Lee’s training Vlogs.


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